Been quite lately looking into other possibilities
But nothing fits like lupus or uctd lupus like this is the only site where it all makes sense
Would you mind if I stayed a while I won’t ask to many questions but my gut is just telling me this is lupus/like
Regardless of my bloods! 😘
How are you all xx
Jade - I missed you. Many of us expressed that we hoped you would stay. You have a very complicated medical problem, and it may take a while to sort out.
In the meantime, we are here!
XK
Thanks kayhimm
Been having a nightmare at home so don’t feel to well now! My brother took a overdose and cut the blood supply to his muscles and has damaged his kidneys then after 4 days Absconded from hospital ! And my 11 year old has changed over night having to move her schools I’m hoping this will sort her out away from any bad influences ! So it’s been a nightmare of late !
How are you ?
You ready for Christmas!
I let all three of mine have a day off 🤭 school today to go to cinema to watch jamaji the next level back tomorrow though they are happy 😊 xx
Buckley, I’m so sorry to hear of all your troubles at home. Stress èsta no bueno with what you are already going through healthwise. I hope that all is better in your world very soon.
Aw thanks how are you xx
I’m ‘eh’. Could be better but could be worse. Thanks for asking.
I hope you even better soon xx
Thank you. You as well! 🙏
You and your family are really going through hell right now by the sound of things Buckley. It's very easy for me to say 'stay strong' but I know how difficult that must be for your at the moment. In my experience things sometimes have to hit rock bottom before they start to improve, but I know they will. The people on this site are your extended family and are here for you. Much love, Liz xx
Of course you are most welcome to stay as far as I’m concerned. I’m a pick ‘n mix autoimmune chap myself, and find this forum hugely helpful. I haven’t been kicked out (yet) x
Thanks lupiknits
How are you ? Xx
Meh, but hey ho! x
Many of us are, and since diagnosis is so hard, it is important to understand people going through this crazy process. The immune system is pretty complicated, right?
Still doing needlepoint as you knit!
X Kay
I am so sorry about your family troubles:(. I am so glad you are still partaking in this community. I hope you are able to find some joy this holiday season. Xo
😍 PLEASE PLEASE STAY 🤗...you’re TOTALLY not alone here: lots of us have lived with LOADS of 🦓 lupus-like manifestations for years, even decades, before The Right True Detective medics began to more convincingly figure us out...and sharing your diagnostic ordeal will help LOADS who come to read posts without actively participating here...you’re dear to ask the ? though...and i hope all these wonderfully positive replies have convinced you to stay 🤗👍🤝✊🤞✌️❤️🍀❤️🍀❤️🍀 Coco
Hello
Sorry to hear that you and your family are going through such a difficult time. Sounds very worrying for you all.
Please do not leave. As you know this is a great site. With so many wonderful members who really want to help and support and share experiences with others. You would never be kicked out, based on “diagnosis” or blood tests.
Stay!
Wendy x
Dear Jade,
Need you even ask?
You should 100% stay with us. Some of us have built an amazing relationship with you. For me Ive always felt like I have you under my wing.
You must remain true to yourself during this hell of a journey. Im sure they say the average diagnosis time is like 5 years. I believe 100% these illnesses mature.
I would be deeply saddened if you was not here, because I am sure many of us will agree on this, your voice note posts that come out completely all over the show is so funny .
Ps. How are those racist anti bodies lol.
I can't use emojis for some reason.
P.P.S. It sounds like you have steered yourself away from the ghastly neurological illnesses which is a positive step forward for you. XXX
Stay! Keep some positive constants in your life.
Your comments hit home for me - my 11yr old girl is going through an "interesting" time too. It's hard work.
Bizarrely on a plus side the whole family went to see Jumanji 2 at the weekend and we had such a lovely family time. Hoping to find more of those moments and hope you do too. Xx
Aww 🥰 guys! I don’t know where I would be without you all to help me through!
My health anxiety hasn’t helped my journey I feel I have pushed and paid for answers which are just not there yet! I feel if I had waited on the nhs I may have hit the bloods on time instead prematurely!
But I have convinced myself of all sorts where nothing can be as bad! Als to Parkinson’s I’ve been told ms to lupus to migraines to thyroid I’ve tortured myself over my memory! I’ve even questioned if my mum really ever had ms What if they where Wrong !
When my brother was taken I’ll before it was learned of his overdose my other brother told me he can’t use his arm or leg and his muscles are dying.
I admittedly panicked I thought that’s it we have this neurological disease hereditary we are all going to dye ! 🤦🏼♀️😂
But no he took so many drugs he passed out cut the supply to his muscles and Released toxins into the blood stream that has started to shut down his kidneys !
I was so worried for him when he left hospital I haven’t seen him in over a year!
I see him though for 4 days before he did a runner!
I had a call last night he was demanding Money he said for food and painkillers I offered to do a online shop an have it delivered but no ! He wanted the money which I can’t give him! I tried hard to get him sectioned under the mental health act but they didn’t want to know! Heroin will kill him I’m sure! Such a shame I really do love him or who he was before the drugs in his Meeting I watched him cry to the Psychiatric team they seem to brush it off it broke my 💓
No one really cares when it’s drug abuse but I know it’s a illness all in it’s self funny how I could relate to they way he felt we just deal with it differently!
We are a year apart and shared the same life! Anyway I’m rambling now!
My 11 thinks she is 21 !! She has a heart of a lion believes she is always right and wants to make her own mistakes!
She bunked school at 12:30 and left with her friend for Harrow 😨 that’s two buses for a child that isn’t allowed of the driveway and the School failed to tell me she was missing until 10 to 3 pick up time I had everyone I know shutting down the area looking for running through the woods making sure she hasn’t got lost it was a crazy time never got hold of her until it was dark she was in JD sports thinking she’s having the time of her life whatever mate I go to her I have no idea she’s never been in her life!
I did get a letter from dr ***** ! It’s not great!
Looks like I’m back to the beginning but I have to believe I’m medically safe for now !
Did anyone else find hydro didn’t really work ? For joint pain? Or have a reaction to steroids ? I had a drip when they first thought I had ms so just after lumber puncture and I went really pale felt I would pass out and then my heart beat so fast they sent me for a ecg
Now dr ***** is saying steroids are not beneficial to me ! Which I don’t even know is true! My symptoms come and go so much it’s hard to know what’s helping what xxx
Hi Jade. Of course you must stay and post - I do and I don’t have full blown Lupus.
I am so sorry about your brother and the heroin and also that you have rebellious 11 year old lion heart daughter to cope with on top.
No drugs have really worked for me and I haven’t taken any for nearly 2 years now. There is an awful lot I’ve learned for myself, through this community and from some doctors over the years though. For the moment I’m focussing on using another chemo cream on my poor lip to try to eliminate cancerous cells. It seems to work by activating the immune system which worries me - but as the condition has affected my entire lip I guess my dermatologists know that the risks of using it are worth braving.
I start it on Monday. Otherwise the focus for me is on doing everything possible to minimise my symptoms and that includes working things out by trial and error and not depending too much on doctors for clarity! X
PS as far as I’m told steroids are a no no unless you really are very ill and can’t function at all. Without any clear idea of what’s wrong with you and what they are treating I would think they would skew everything more than they would help. Your dr might at least be right to say this I think.
I c think your right il upload the letter for you too see maybe it doesn’t read as bad to you guys as it dose to me!
I hope this treatment works for you twitchy you have had such a ruff ride cxx
Oh sweetheart! What an awful experience you are in right now with your wider life. What you are going through is so so difficult. 😔 Let alone how exasperating and depressing your journey has been to get absolutely nowhere with a diagnosis.😡
Really feeling for you in both of these directions. Please know we all are better for your presence here. 🤗🤗
🐼xx
I’m the same as you, not been diagnosed as had a negative 1:180 ANA about three years ago but when I googled my symptoms it came up with lupus and the health unlocked forum, I’ve cheekily stayed because I have so much in common with the true sufferers.
My inflammation is always high, painful joints muscles, tendinitis and bursitis, sinus tachycardia, peripheral neuropathy, malar rash diagnosed as rosacea but doesn’t respond to treatment. Acid reflux and gastritis and bloating, episodes of hair thinning, days when I feel exhausted as if been hit by a bus, sinus issues, dry skin, eyes, mouth and all mucus secreting places, episodes of eye bleeds, type 2 diabetic (once, not now)!! Sudden temperature rises, episodes of vomiting, diverticulitae, positive antibodies in 2017 confirmed prior to hysterectomy which also confirmed I had endometriosis and adenomyosis. Multiple arthritic joints and osteoporosis. Very stiff joints, reynauds has been mentioned by my chiropodist and a podiatrist.
I think maybe if not lupus I’m leaning more toward a CTD. The whole subject really interests me and I shall continue to fight for an answer as I insist it must have a name.
What are your main symptoms and have you had any diagnoses? Hope you’re feeling the best you can today .
Kay
Hey krawklins
Interesting read we are quite similar I am also have painful joints and muscles tendons sinus problems I do get flash and of the cheeks I have acid reflux and episodes of her singing also I feel exhausted like I’ve been hit by a bus to dry skin eyes and mouth I have a scallop tongue I do get our episode of vomiting mainly after alcohol I have polycystic ovaries it was queried that I had my hair ReynardsBut since I see Dr to c again he decided I didn’t in fact he didn’t look any further into it I was diagnosed by Dr the c as UCTD and then I see a member of his team dr s who Disagreed with all doctor c findings When I went back to see Dr C he completely changed his mind I have two letters saying completely two different things my bloods are all negative apart from elevated ace levels And some borderline TPO antibodies for thyroid my argument was that the antibodies proved that there was something autoimmune going on but no
My main concern is obviously my brain lesions which can only stay me in so many directions I feel I have exhausted all of these I’ve convinced myself of so many worth of things such as dementia even though I’m 29 it can happen I’ve been tested for MS my mum had MS she passed away last year my MS tests are all negative out of a bit of a loss really how are you xxx
I am so sorry to hear all you’ve been through and continue to suffer.
What explanation do they give you for the lesions on your brain scan? I’m so sorry you lost your mum, you’re so young too.
We do seem to have a lot in common but I’ve had three brain scans and though I’ve never seen the results I’ve seen a neurologist and nothing has ever been mentioned.
Anxiety and complex pain syndrome have however been mentioned and while I think these play a part they are not the cause of the long list of symptoms. I’m sorry your doctors have differing opinions, how confusing for you. I hope it won’t be long before you get the right answers and diagnosis that we both feel is missing. Pain management told me unashamedly to stop looking for a reason for my symptoms, join a gym and I would be better in three months, I haven’t tried his theory yet and now they’ve signed me off as well as rheumatology and now orthopaedics want shot off me after offering me a fusion about three years ago !!
I wish you all the very best in your search for the right answers, just need the one right person to join the dots xx
Totally agree with the other replies Jade..stick with us kid n we'll help pull u through!! 🤗🤗
Unfortunately it sounds as if your brother is in self destruct mode n if he doesn't see that his drug taking is causing problems he won't stop!! U did the right thing not giving him money n offering to get him some grub instead..just the fact that he said no means that he's only interested in money to buy heroin!! Until he recognises that he has problems not even the best doctor in the world will be able to help him..sorry mate but that's how it is for people who become addicted to anything..it's only when they realise there's a problem n want to make changes that treatment is possible. Do not trust your brother..sad I know..but the drug is more important to him than anything or anyone at the moment n u might find cash going missing from your purse or sellable items going missing from your home. An addicts whole life revolves around getting money to buy heroin..to use it..n then they're usually off looking to get the money for the next hit..it's all encompassing n it wrecks families!! And I'll mention that drug addiction is not a sectionable illness so u wouldn't get anywhere with that. If u check in your local area there will probably be an addiction service but unfortunately there will be a long wait n if your brother doesn't want help there's not really any point!!
Ah..daughters..bless em!! I had two n they were both teenage nightmares!! They're grown up now..we did get through it!!
Kat 😽😽 xx
Hey 👋
Don’t worry I do agree with you I don’t give my brother any money he also doesn’t live anywhere near me who lives in Bedford so he is nowhere near my children or my home
it’s just very upsetting to hear somebody want to destroy themselves so much for no reason well there is a reason mentally I think he’s unwell unfortunately he doesn’t want to help himself mental health units are not interested they seem less interested due to his drug addiction.Daughters ay who would have them glad you got through it gives me some hope LOL 😂 xxx
Hi Jade. You really don't need this with all your health issues, but I fear there's nothing much you can do about your brother until he recognizes that he needs help (I very much agree with KrazyKat) - harsh but true. As for your daughter - well - my daughter was pretty unruly at 11y but now she's a lovely, caring , kind adult! Very hard to deal with at the time, no disputing that, but most of them come through it ok - eventually.
Of course you should stay on this site - we're your cyber family and we love you. Please keep us updated. xxxxxxx
Hey meg
How are you yes she seems a little better these days I’ve taken Her out of the school and I have changed her mobile phone number and deleted all her contacts which seems unfair but fair if you see what I mean cruel to be kind !
I will of course keep you all updated on how I get on no one else will listen to me lol 😂 Looks like you guys are start bringing me back down to earth when somebody says something that takes over my health anxiety how lucky are you guys 🥰🤣
I'm doing just fine, thank you.
You are not being cruel - sometimes it takes drastic actions to get results, so well done you for taking it on! I - for one - always love to hear about you, so please don't disappear. xxxx
Hey Jade. So glad you are staying. So many of us are undiagnosed or partly diagnosed or re-diagnosed. I still get joint pain on hydroxy too. I expect lots do.
Hope you are doing ok? What a worry about your poor brother😢 And you gotta love those (almost) teenagers - it's their job to drive you crazy. S
Hey 👋
Yes she think she’s a little woman I’m Trying my best to bring her back down to earth with a bang my brother unfortunately seems to want to self-destruct my mother had the same personality they just seem to hit the self destruct button which is really hard to watch especially after my mum dying but there is nothing I can do.
Do you have any negative bloods or they always been positive or I just feel like I’m running out of options like things are getting more to the point of neurological like dementia I know at 29 that is pretty far-fetched but I just want to know what’s wrong with me so I could move on I feel like something bad is about to happen I think if I knew what it was then I feel a lot more at ease and people don’t seem to understand that after seeing somebody deteriorate so much in front of you I would literally do anything to not be in this position I am in I think a part of me hopes I have lupus because there are some really nasty alternative that affect your brain Plus Lupus fits And it was the doctors that brought me their first never heard of lupus before Then they tell me I have health anxiety I don’t even know how these things existed before they started xx
Sorry you are going through this, I don’t have diagnosis or show in bloods but share many of same symptoms ,but am here still and don’t want to leave unless asked to, we have lovely people on here we share so much with and I don’t think they would want you to leave especially when you need support. We all do that’s why we’re here to give and receive.
Hope things improve soon, 🙏
Best wishes x
Hey stiff ❤️
Makes me feel so much better that I’m not the only person in this position like you’re not alone obviously don’t want you to be suffering but it does help I let my mind run away with me I was just in the gym and some lady started talking to me about MS and motoneurons and how they can be looked at in the same light and people don’t realise what they’re saying and how it can have a negative effect on my mental well-being especially the doctors they seem to say there was something wrong and then Next appointment act as if I have some health anxiety like I’m a nuisance to them like I’m imagining it all and I’m really not I just want to be around my children for long as I possibly can with good quality of life after watching my mum I think that is something there are strikes in love with me I would want my children to see me deteriorate like I watched her Rambling now I know but they don’t understand the words of the things that they say the way they can have an affect you know lupus itself it’s not something that can be taken lightly it’s a lifelong condition chronic condition affects everybody’s life differently xxx
You’re not rambling it’s how being undiagnosed gets you, I used to feel like I was going crazy , it can be hard for some people to understand, I’ve been treated like a hypo, a nutter and even lazy when I’m knock out fatigued. It was even harder with invisible symptoms but now things can be seen I get a tad of empathy from friends and family but it’s not that I need it’s a diagnosis , to validate and help me understand myself why I have these symptoms and how I can help myself to alleviate some. If I had no hands people may have understanding of how difficult it may be but luckily I have hands but when I can’t use them no one understands how difficult it is. It’s just all so very hard whatever it is, and so many symptoms I find very hard to believe there is no diagnosis other than fibro of course, which is not fitting even if part of in my eyes and just an excuse for not looking further, and unacceptable to me.
I feel so much for you and anyone in the undiagnosed position, it’s hell , when as someone yesterday said to me ... it’s horrible when you’re mind brain plays tricks on you 😡😡😡😡 it’s demeaning, id like a brain scan and iq test whatever to prove my brains fine it’s the rest of me. I couldn’t argue without visible physical symptoms but sure do now.
Now I’m rambling but I get you Buckley and one day someone is going to have an answer for us until then we battle on. I was looked at by rheumy discharged and worse ever since. No let’s see how it goes no follow ups nothing just left to this, the only good thing is it’s not life threatening but it is life destroying.
I know what you mean it is nice to know you’re not alone , and we are lucky with support on here 🙏
Chin up Buckley it’s hard , but it’s the battle we got to fight, ive learnt from our friends here, my thoughts are with you, try and enjoy Xmas and battle on after 🙏
Happy xmas to you and yours xx
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